Hi all again, here is the response from CCG about T3, as far as I understand they are asking for a confirmation from the NHS hospital that I need T3 right? Is it something my GP should do like send them my appointment results and their recommendation or the NHS endo should apply for T3 to be prescribed through NHS? Because when I spoke with my GP about this she didn’t say anything like this, she just said ir
was refused because of no evidence that it works compared to the price😳 thanks again
I would hide the personal details 🤔
They are asking for confirmation from the endo. after a follow-up appointment. I would send them a letter saying that they have been told you need liothyronine, this should continue until they are told you don't need it. If they wish to get reconfirmation they should contact secondary care and not cancel your prescription until they are told you don't need it. (They are giving you and your GP the runaround, push the work back on them).
I would ask them for details of their formal complaint process and in the meantime complain to NHS England (may not be able to do much but rattle their cage) and also contact your MP. I think we need to be firm and assertive in these cases, put the CCGs to a lot of work if they don't behave (these people hate work, they want to get everyone else to do the work).
Your NHS endocrinologist presumably started you on 3-6 months trial of liothyronine, with T3 prescribed via hospital pharmacy
Assuming trial has gone well, the endocrinologist needs to write to GP to formally request they take over care, prescription (and cost) with annual review back with endocrinologist
If CCG/GP are being obtuse then endocrinologist may need to put in individual funding request
sps.nhs.uk/wp-content/uploa...
I started combo with private endo, when I didn’t feel well on T4 alone and my previuos GP didn’t want to do much I found help on this forum and went to private endo having very clear goal already - try T4/T3 combo (T3 purchased myself from Germany). Later the endo wrote to my GP to refer me to the NHS endo as my private insurance does not apply to this type of disease (long term monitoring) and this was the first time my current GP requested approval for T3 and this was their response.
In the short term you can ask your GP to write a private prescription for a multiple of 50 tablets and buy them from Germany.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3. There are only a very few NHS endocrinologists who do so
thyroiduk.org/tuk/About_Us/...
It’s almost certainly a waste of time being referred to local NHS endocrinologist who will be mainly diabetes specialist
Your GP may be reluctant to refer at all, so you need to approach this carefully
A GP is unable to prescribe T3 on NHS unless an NHS endocrinologist says you have clinical need. It’s likely you will need to continue on private prescription while you try to sort this
Website showing numbers prescribed T3 on NHS in England
You can search by individual CCG area
Hi
Your private endo can't just write to your gp if it's blacklisted the gp has applied to the CCG which is more than most would do but it needs to come from an NHS endo I think so the gp should refer you to an NHS endo enclosing a copy of the private endos letter in the referal but it all depends on the endo that they refer you as to whether they agree or not and you will only beable to get it from the hospital and they only stock set brand mercury or sigma unless the endo agrees to source thybon Henning which I doubt very much. Iav been stuck in a similar situation and they won't agree to prescribe on a private or name patient or authorise gp to prescribe in the community as if it is blacklisted in your area they won't take it up as they won't be insured.
There's no point complaining to NHS England, CCG or MP s as it gets you no where but more stressed in my opinion as I have been there and got no where.
Plus the CCG won't take responsibility they say the Endocrinologist overrides everything so the only way to resolve it is to research another endo but like I did it didn't get me anywhere as they rejected the referral and I searched the Thyroid UK list !!
The gp also won't agree to a private prescription if they are run by the NHS and not private as they abide by the NHS regulations that's what happened to me so if you have options of private surgery's in your area that also have NHS doctors I would change surgery's and go to a private run surgery as they are more likely to agree to a private prescription depending on the GP.
Other than that once you have complained to the CCG and got no where you can complain to the Ombudsman.
Good luck !!
Private endo that I was seeing works through NHS too and I was referred to that hospital so he and his team have all previous results. After my 2cd apppointment with NHS endo my gp applied to CCG, so T3 was advised already by NHS endo. The only thing I don’t know if my GP has to send my last appointment outcome or the endo needs to apply for funding.
That's unusual is your gp private run, where are you based? As I went for a second opinion but it was demanded by the first endo to endo he liked so you get the situation !!! as mine is slightly different I was reacting to levo and the brand of liothyronine the endo was prescribing at hospital as prevous I managed to get my liothyronine brand I could tolerate through community pharmacy until it was blacklisted and gp refused to prescribe it and the second opinion endo said I should get my gp to do what yours have done and apply to ccg so they can get authorisation and so can get a green prescription and go to a community pharmacy to get the brand I need but the GP refused and said it was blacklisted there fore the endos had to do it but unfortunately my original endo was an bleep***** and he refused to send the form to the CCG as he wasn't willing to do it as he wasn't gonna be insured if he did so I ended up giving up and still stuck because it nearly put me in an early grave with all the stress and I was very ill !! And now trying different NDT out it was horrific how they treated me and many others will no doubt have similar experience who are genuinely really ill and struggling and they just leave you to fend for yourself so I am sourcing NDT as no option yet the endo and the GPS know full well the situation they have left me and others in. I really dont know how they are able to continue what they are doing and are able to get away with it it should be in the news it's completely immoral.
The best thing would be if everyone just went on NDT and the pharmaceutical companies lost a laid of many not selling levo or limited brands of liothyronine!!
It's still the same situation they are asking for confirmation from NHS endo so if you can find an endo that will confirm and send the form or prescribe through the hospital your ok but I doubt you will get thybon Henning through the hospital, Just because it's a private endo doesn't mean there is special previalges they still have to follow the procedures. What exactly did the gp say to the CCG are they private run as my gp refused to do that even with the backing of my second endo opinion letter who advised them to do it so not sure how your gp has just agreed to is it blacklisted in your area as majority of GPS will not just apply to the CCG they refer to an endo and then it's up to the endo and nearly all endos won't fill the form out to the CCG as they are not insured if you get liothyronine on prescription in the community so if you dropped dead they would be liable ?
Hi Sveistre, I'm under the same CCG. My NHS endocrinologist wrote to GP formally saying I needed liothyronine and that GP should be issuing me prescriptions. The GP sent a request to CCG and it came back rejected as it is a "double red" medicine in our area. I didn't see that letter but this is what the GP said on the phone. She was very angry with me and endocrinologist that we got her involved with CCGs. My GP is now issuing me private prescriptions for liothyronine.
Hi, it didn’t say in my rejected because red medicine or smth, they said they need confirmation from my NHS endo, so my GP sent them/him letter asking to confirm this to CCG, waiting for resolution now
You're more lucky than I am! For me, they didn't even ask for any clarification or confirmation, just rejected. Full stop. 
Can you let me know, once you receive a response from them. If they approve it for you, I may try approaching my Endo and GP with it again.
I've been on combo for more than a year. We tried approaching CCGs last spring after I'd been on it for 3 months showing massive improvement. Both Endo and GP happy with me taking T4+T3 and know I buy it from Germany. Endo agrees I should be able to get it on NHS prescription, however, no joy with CCG.
So had a phone call from my GP the other day that CCG finally approved the funding for my T3😱😍
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